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Dec 2 2023
How the uncertainty in CAMHS processes harms Autistic children and families

Autistic people are somewhat renowned for struggling with sudden change and uncertainty. While not necessarily universal, it is prevalent enough to be a talking point in many Autistic spaces. This raises issues when we consider services like CAMHS (Child and Adolescent Mental Health Services) in the UK. Like many NHS services, procedures and staff are subject to change and high turnover of staff, meaning that you can never quite be sure of what is being done.

High staff turnover in CAMHS is damaging Autistic children

During the 2021-22 period, 17,000 (12%) members of staff left their role within NHS mental health services (House of Commons report, 2023). This represents a large portion of staff that may have been involved with or critical to the care of Autistic young people.

“The PAC [Parliamentary Advisory Comittee] calls on the NHS to address the fact that staff increases are being outpaced by the rise in demand for services. The NHS mental health workforce increased by 22% overall between 2016-17 and 2021-22, while referrals to these services increased by 44% over the same period.

House of Commons report, 2023

With demand rising, Autistic people potentially represent a huge portion of that 44% increase. According to the Mental Health Foundation website, 70% of Autistic people have a mental health concern. Despite this, a separate report for the PAC found that just 1 in 10 CAMHS patients are Autistic. I infer from this that high staff turnover makes CAMHS inaccessible due to the uncertainty of seeing the same member of staff, or services even having the staff to meet the demand from the Autistic community.

CAMHS can’t upskill for Autistic clients while dealing with staff shortages

The same report that showed high staff turnover also suggests that staff shortages are preventing services from “improving and expanding”. This is true. Staff recruitment and retention costs money. According to NHS England (July 2022), a huge number of new staff were recruited, amounting to an extra 40% of the workforce. Recruitment like that costs millions, with millions more poured into basic training. You then need to spend more money to keep the workplace hospitable enough to retain that staff.

It is clear from the aforementioned turnover rate that staff retention is failing. However, the millions being poured into replacing those lost staff members is money that vould go into meaningful changes to how services support Autistic young people. Tanya Adkin and I have written previously about how CAMHS failures can be life threatening for Autistic young people. It is clear that part of making a CAMHS that is safe for young people is making a CAMHS that is able to retain staff.

How does CAMHS create uncertainty for Autistic young people and their families?

With ever changing staff and heavier focus on recruitment and retention than on upskilling, there are some significant issues. The primary issue is one of gatekeeping; rather than make a CAMHS that can successfully support Autistic children, they gatekeep and obstruct them from their services.

Another factor to consider is that those few Autistic young people who do make it through the door, are faced by constant staffing changes. Differences in Autistic processing of change mean that sudden changes to staff could be deeply distressing (Ausome Training, 2022).

Staffing changes also present a third issue. Support provided by CAMHS and other mental health services is often at the discretion of individual professional opinions. If one member of staff promises something, and then is replaced by someone who disagrees, this might pull the proverbial rug from beneath that child and their family.

How does this harm Autistic children and their families?

Not only is the uncertainty harmful for the child or young person; a dysregulated child can lead to dysregulation in the whole family unit. When our children suffer, we suffer. No one wants to watch their child struggle with suicidal thoughts or meltdowns, which can be particularly more problematic as a young people grow older. There is the potential for both emotional and physical harm for the Auristic young person and members of their family. The Autistic community fights for acceptance, and as part of that, we have to fight for services that don’t fracture and injure our families.

In the fight for Autistic liberation, there is no fight so important as the fight for our wellbeing. While our children and young people suffer their way into adulthood (if they make it that far), there is no liberation for Autistic people. We must also see to it that the wellbeing of Autistic families is not the cannon fodder for services with misguided priorities.

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David Gray-Hammond 0 Comments
Nov 24 2023
I just watched the channel 4 documentary on Autistic inpatients: thing need to change

On Channel 4 in the UK there is currently a documentary from their dispatches series called “Locked Away: Our autism scandal”. This is a very upsetting documentary, and it has made one thing very clear to me. Autistic people are suffering at the hands of an oppressive mental health regime; we need to push back. The contents of this article may be very triggering for some people.

How many Autistic people are on psychiatric wards?

As of January 2023, there were 1,280 Autistic people on psychiatric wards (National Autistic Society). This is 1,280 chances to provide meaningful care, and yet I would hazard a guess that this has happened with none of them. Among the general population, those who have been held as psychiatric inpatients are 191 times more likely to die by suicide in the following months (National Institute for Health and Care Research). This is all-the-more concerning when we consider that while Autistic people represent 1% of the population, they represent 11% of suicides (Royal College of Psychiatrists).

Is inpatient treatment helpful for Autistic people?

I have written previously about the mistreatment that goes on in inpatient settings. I am far from the pnly person who feels Inpatient settings are inappropriate for Autistic people. The National Institute for Health and Care Excellence themselves have documents on their website stating that inpatient facilities have “lots of scope for improvement in autism friendliness”. Simply put, no, as it stands inpatient services are not helpful, and may even be detrimental for Autistic people.

My own experiences of being an Autistic inpatient

I have been an inpatient twice, in two different hospitals. The atmosphere is prison-like and hostile. The sensory environment is unbearable. There is a constant feeling that things could erupt at any moment, and staff make this worse.

Contraband such as alcohol and drugs flowed freely on the ward along with razor blades and other harmful items. Staff would use physical and chemical restraint to punish patients, and speak to us as if we were an inconvenience.

When I had reached the end of my patience with the environment (on my second stretch on the ward) I attempted to leave. I was told that if I tried to leave police would be called and I would be changed from a voluntary admission to an involuntary one. I now know this is an abuse of the mental health act.

I left the psychiatric ward in a worse state than I arrived. My care co-ordinator at the time would go on to state in my care plan that I should never be hospitalised again if possible. A difficult thing to write in the care plan of an Autistic Schizophrenic. I am still dealing with the fallout of the sheer quantity of medication they gave to me now, 7 years later.

Why is the inpatient system like this (concluding thoughts)?

Autistic people, particularly those of us with mental health concerns, are seen as sub-human. The system we live within views us as disposable and burdensome. We may have moved into an era of “care in the community” in the post-asylum era, but the attitudes of the old Bedlams are still very much with us. It is assumed that we will never be meaningful contributors to the world, and as such are the victims of a system that uses our mistreatment as an incentive to remain a good, tax-paying, law abiding citizen.

I personally will not stand for the mistreatment of my neurokin, it is time we pushed back and dismantled the systems that mistreat us. We need to throw away the masters tools and dismantle the house with tools of our own design.

David Gray-Hammond 0 Comments
Nov 14 2023
CAMHS Crisis: An Autistic parent speaks out

Since this campaign to change the way that CAMHS (Child and Adolescent Mental Health Services) treats Autistic children and young people started, I have been blown away by the bravery and commitment to making a difference I have seen. Hundreds of thousands of you have come forward with your own stories, laying bare that which makes you vulnerable. I feel as though we are drawing a line in the sand; this year of 2023 is the year where we no longer accept statutory services threatening the wellbeing and lives of our Autistic children and young people. In line with this, an Autistic parent has very courageously come forward to tell me their story of CAMHS failing their child. Please note that the quotes have been anonymised in order to protect the identity of the family.

Autistic young people need services like CAMHS

I have written extensively about the relationship between being Autistic and having mental health concerns. Much like all of these stories of CAMHS, it starts with a young person in crisis.

“My daughter had a major depressive episode for approximately 2 years when she was 14/15, we now know this was autistic burnout.

Young person’s parent

Autistic burnout and mental health are intrinsically linked. If you have read the writing on this website around atypical burnout, you will have some idea of the diverse ways in which burnout can impact us and our behaviour. Despite this, Autistic burnout is still to enter into mainstream knowledge within services that work around mental health. This despite the growing body of research on the topic such as Raymaker et al (2020).

Accident and Emergency departments are ill-equipped to cope with mental health and neurodivergence

“Everytime she wanted to take her own life we were referred to A&E where we would go and then wait up to 48 hours for someone from the CAMHS team to come and assess.

This happened several times. I myself was coming out of an autistic burnout and was in no fit state to fight and battle, i knew nothing about being autistic at the time.”

Young person’s parent

One of the big issues with referring an Autistic young person to a hospital is the communication and empathy divide. Most will have heard of this as “the double empathy problem”, but healthcare in particular offers additional barriers, creating what Shaw et al (2023) refer to as “the triple empathy problem”. This represents the fact that not only is there an issue with Autistic to non-Autistic communication and empathy, but also medical professional to non-medical professional communication and empathy.

To consider it another way, hospitals should not be assumed to be the right environment for an Autistic young person who is experiencing suicidality. CAMHS and other mental health services use this as a stop gap, usually before gatekeeping the young person out of services.

Autistic young people often end up in psychiatric inpatient units

Unsurprisingly, the fallout of CAMHS failing to appropriately support Autistic young people is that a great number of them will end up being sectioned and detained under the Mental Health Act. Detention of Autistic people has been a point of contention between Autistic people and the government; this contention has been further amplified by the recent ditching of reforms to the Mental Health Act.

“It was decided the best place for my daughter was an adolescent hospital in Cranbrook, Kent

I thought she would be there for a couple of weeks but she got a lot worse, self harmed, escaped which got her sectioned and was there in total for 6 months.”

Young person’s parent

Unfortunately, it is not unusual for voluntary admissions to turn into involuntary detention. I would also note as an Autistic person who has been an inpatient that wards often have a supply of contraband as well as being incredibly triggering environments. Self-harm and escape attempts can become a self-fulfilling prophecy. I personally was threatened with the police if I attempted to leave. Much of this would be unnecessary if CAMHS treated Autistic people equitably.

CAMHS and crisis teams

Anyone who has had a mental health crisis and attempted to access support will probably be familiar with crisis teams. In England they are often called Crisis Resolution Home Treatment Teams (CRHTT). They again stand as a barrier between the young person and long-term support from CAMHS. I am aware of many people who have been discharged from the care of CRHTT’s to manage on their own.

“A crisis team visited for a week after to check we were okay. Sent for DBT [Dialectical Behaviour Therapy] therapy (didn’t work), and signed off with antidepressants.”

Young person’s parent

DBT much like CBT and other NHS therapies is only as useful as the therapist and the therapeutic relationship. CAMHS have neither the resources nor staff to give young people a choice of therapists, and as such, if you get a bad one, you’re stuck with them or labelled as “not engaging”. I would also note the generic addition of antidepressants. While they have their place, they are not a solution for Autistic burnout, and if CAMHS knew anything about Autistic experience, they wouldn’t use them as a go to treatment.

CAMHS and the invalidation of Autistic experience

If you’re undiagnosed at the time of accessing CAMHS, you will find that you are constantly invalidated. Everything is an illness, everything is part of your illness. They will convince you that your experience isn’t real. and that there is no better support out there.

“CAMHS involved lots of waiting, gaslighting, not believing, not listening, accusations of bad parenting. If they had listened my child wouldn’t have been admitted to a psychiatric unit. She would have been diagnosed as autistic.

All the wrong support was given.”

Young person’s parent

I would particularly note the mention of bad parenting here. Autistic and otherwise disabled parents are much more likely to fall victim to what Clements & Aiello (2021). This can go as far as accusations of fabricated or induced illness (FII). Parents are being used as the scapegoats for underresourced and incompetent services.

CAMHS wont help Autistic young people

Text reads "CAMHS should not be turning away Autistic children"

“From a different perspective, if she was initially diagnosed as being autistic then she wouldn’t have received any support at all and turned away!”

Young person’s parent

If this campaign over the current CAMHS crisis has bought anything to light, it’s the fact that hundreds of thousands of Autistic young people are being turned away from support for no other reason than their neurodivergence. If CAMHS are not equipped to support them, it is time they became equipped. Refusal to support marginalised groups is complicity in their oppression and deaths. Our children deserve so much better.

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Supporting your Autistic loved one

Here you will find a collection of information about supporting your Autistic loved ones and the barriers that you may face as a parent, child, or adult. Below are a growing collection of articles and resources. More will be added to this over time. For information on some of the basic knowledge around neurodiversity, try…

Neurodiversity: The Basics

Within the Autistic community, much of the basic theory that exists within neurodiversity studies is taken for granted. For newcomers, it can feel very overwhelming to understand as this body of ideas has been growing for decades. This page aims to take some of the core ideas and explain them to newcomers. What is neurodiversity?…

David Gray-Hammond 0 Comments
Oct 24 2023
A story of being Autistic and getting referred to CAMHS

This article is a guest post written by Asher Jenner

Some of the content of this article may be triggering

I was a happy child until the age of 5 when I went to mainstream school. On the first day of school, I began self-harming and by the end of that week I attempted to use a ligature to strangle myself.

I knew I was different to all the other children in school who could simply obey the school rules, be quiet, sit still, concentrate on work, not shout out answers to questions and enjoy team sports and games and playtimes. I really struggled at school to do all these things, but I was very bright and wanted to learn.

When I left school each day, I immediately went into Autistic meltdown due to my masking all day and the way the staff and pupils treated me. I was verbally aggressive and threw large items such as an armchair and a large TV. I kicked and punched anything near to me. I was majorly distressed.

My parents asked 3 times for school to refer me to CAMHS for an assessment for Autism so
that they would get the right support for me at school and so they could help me properly at home. School refused to refer twice but referred the 3rd time. Someone from CAMHS came into school and observed me in 1 lesson for an hour when I was heavily masking. They asked mum and dad to fill in a questionnaire which was assessing for ADHD, when they had asked for an Autism assessment! Aged 6 CAMHS told me I had no condition at all but that I was willfully naughty and attention seeking. They told my parents that their parenting was at
fault and sent them on a standard parenting course. The person running the course agreed
after 2 sessions that the course was not suitable and was a waste of time.

My behaviour at home and school became more and more distressed. I had no friends at
school, and I had major Autistic meltdowns at school and at home. The self-harm attempts
to kill myself and the feelings of major distress just grew massively. School refused to refer me back to CAMHS and so aged 7 my parents got a private Autism diagnosis. The report from the diagnosis said I required urgent assistance from CAMHS due to my poor mental health at a tier 4 level. CAMHS refused to even see me.

Subsequently, my parents got a private PDA diagnosis, but CAMHS insisted that PDA did not exist and that I had Asperger’s. They told me it was a gift, and I should be happy to have Asperger’s. They showed no understanding whatsoever of the difficulties faced by Autistic or PDA youngsters, and they were the very organisation we trusted to understand Autism and PDA and to give appropriate support for that and mental health issues associated with it.

My mental health declined consistently from this age to the age of 15, when I was taken into an inpatient eating disorder unit as my life was in danger.

I was referred to CAMHS on many occasions during this period, such as when I was excluded from school, as I was classed as a danger to myself and others. They saw me a couple of times and offered basic breathing techniques and nothing more and discharged me! They finally agreed to give me Melatonin so that I could sleep, but they offered no support for my OCD and germ anxieties which had begun due to my severe anxiety levels.

They were asked on many occasions to give support for this as it was starting to really take over my life, but they refused. They refused for many years to give me any anxiety medication or therapeutic support, and their attitude towards PDA altered from it doesn’t exist, to it may be a thing but as it isn’t diagnosed here, we are not trained in it, and we will not be trained in it and so we cannot help you. Please be aware that we have many friends in the PDA society who are official trainers for the PDAs society.

We offered on many occasions to give
free training in PDA to CAMHS, but they refused to accept the training. On each occasion they stated that CAMHS were poorly funded and only had enough funding for 6-week standard therapies. They had no funding for neurodivergent services or alterations or extensions to their therapies. When my parents asked how we could get access to correct services or funding for me, CAMHS always replied there is none!

Emergency CAMHS were called on several occasions where I was extremely distressed, and it was nighttime. They refused to come out to me as they read my notes and said we don’t have training in PDA, and we have no drugs and no therapy to offer you. We come in a large team of people, and we know this would increase your anxiety, so we won’t come because we know it would make things worse! They said they would get core CAMHS to call us and give proper support the following day. They stated it was core CAMHS job to support people like me. Core CAMHS NEVER contacted us after any of our emergency CAMHS calls.

My germ anxiety reached the point where I would not leave my bedroom other than for
medical appointments. CAMHS offered immersion therapy in a 6-week standard course, and we took asked them to alter the therapy to be appropriate for PDA and Autism and advised them that it would take much longer than 6 weeks, but they refused and said it’s all we offer, take it or leave it. As the PDA society and the NAS had both advised that it would cause further harm and distress to have this therapy as it wasn’t in any way suitable for PDA, my daughter declined the treatment and again asked in writing for something suitable for her which would meet her needs. We received no reply.

My mum literally begged CAMHS for some help for me because my germ anxieties were so bad. They came round to the house and said they could not help at all but said I should go voluntarily into an inpatient unit for yet more standard treatment! I was traumatised by this and both myself and my parents knew it was totally unsuitable for me. We all told CAMHS this, but they just ignored us. I was left at home with no support for my mental health which worsened again to a point where I developed an eating disorder.

CAMHS only offered standard Maudsley method eating disorder support, which is a series of demands and is therefore totally inappropriate for a person with PDA (Pathological Demand Avoidance.) Again, we got advice from the PDA society and the NAS who both said do not accept this as it will worsen the mental state of your child. CAMHS insisted that was all they could offer and left me to get worse and worse. When I got to the point of refusing to consume any calories, CAMHS forced me into hospital, which further traumatised me.

In hospital, emergency CAMHS came to visit and stated it was not a classic eating disorder, I should not be in hospital as it was causing me trauma to be there, that standard eating disorder Maudsley method treatments were not suitable for me and that core Camhs should treat me in the community. Core Camhs ignored this and carried on stating that I had to have standard Maudsley method treatment from their ED team. The ED team refused to alter any treatment as they had no training or understanding of PDA and did not know how to help me. So again, I was left to get worse and worse.

CETR meetings advised I could finally get a package of support for suitable treatment in the community and admitted that CAMHS had failed me due to lack of PDA understanding and sticking to the line of you must accept standard treatment. No suitable treatment in the community was found and I was in hospital for 2 months classed as life in danger.

During that period, CAMHS and NHS England were meant to be finding a suitable place in a
unit which could meet my needs. They failed to do this, and so threatened in writing to
remove me from my parents’ ‘harmful’ care, to section me under the mental health act and
to take to me to a standard unit of their choice for standard care. Camhs psychiatrists told my mum that she was harming me by stopping me from receiving this standard care and would not listen to her when she advised that I needed care which met my needs and took account of my PDA, and that standard care would worsen my mental state and I probably would not live through it. Mum had to get legal advice from a barrister to get CAMHS and NHS England to change their views or we would take them to a judicial review, and at that
point suddenly they found a suitable unit which could give me a holistic person-centered approach and could meet my needs!

I went into Ellern Mede specialist eating disorder services unit in Rotherham and left 14 months later a totally different person. The treatment was amazing because I was listened to and understood, my needs were met, I was treated with respect, I was treated for all my mental health issues, approaches and therapies were altered appropriately, I was involved fully in my care and treatment. In other words, all the things which CAMHS had refused me for 10 years even though both myself and my parents had been asking CAMHS for it for 10 years!

I was diagnosed with general anxiety disorder among many other things at the unit and given appropriate medication for this. CAMHS had always stated that my anxiety was part of my Autism and on that basis, they refused to give me any medication for it.

The report written at the unit by the psychiatrists and psychologists stated that I was severely traumatised, and that the trauma had led to mental health issues and an eating disorder. The main causes of the trauma were stated in writing as mainstream school and CAMHS. So, to be clear, it was stated that CAMHS were the cause of my mental health issues, my trauma, and my eating disorder.

Since leaving the inpatient unit, I have had a very different life. I have finally been able to go back to school, which I missed for many years due to my mental health issues. I am taking and passing my GCSEs with level 7s and 8s. I have auditioned and am taking part in the Centre for Advanced Training at the Northern School of Contemporary dance, and I hope to study there for a degree in dance and open a fully inclusive dance school. I also present and train in Autism, PDA, mental health issues and eating disorders as well as advocating for others like myself. I present and train and advocate because I know there are thousands of other neurodivergent youngsters like me who are being failed by CAMHS and it must stop! I suffered massively for years because of them, and I almost died.

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Asher’s Bio

Since leaving the inpatient unit I have been determined to spread awareness and understanding so that no one else suffers as I did.

I have presented and trained both face to face and online in PDA, Autism, mental health issues and eating disorders.

I have worked for the PDA society, the NAS, Autism Accreditation, NHS England, the PDA Space, and the PDA summit 2023, various Autism charities, parent carer forums and Sencos across many areas etc… I have done a podcast with Anna Kennedy OBE, and I have been involved in getting a book called the Autistic Teens Avoidant Eating Workbook by Dr Elizabeth Shea published. This is a self-help workbook for Autistic Teens with Arfid.

I have trained in PDA and eating disorders in combination in Ellern Mede inpatient units, and they have advised me that my training is helping them to recognise people who have PDA but may be undiagnosed, and to give them appropriate PDA friendly supports. My work has been sent all over the world at the request of individuals including parents and those with eating disorders and PDA as well as some professionals.

I am hoping to be involved in having input to the Oliver McGowan mandatory training for inpatient units, so that PDA will be added to the training. I have just recently become a trainer for the PDA society, and I hope to be able to reach more professionals, parents and other neurodivergent people to bring about understanding and support for people like myself.

I have received a Radio Humberside Making a Difference Highly commended award in 2022 and I have been nominated for an Anna Kennedy Autism Hero award this year 2023.

I have also been able to return to my school and my studies and I have passed 3 GCSEs with good grades. I have 2 more to finish this year. I am now dancing at the Northern School of Contemporary dance, and I hope to go on to do a degree in dance there.

My ultimate goals are to run my own fully inclusive dance school for all, and to carry on my advocacy work in some guise. I’m currently voluntarily presenting and training, but eventually my plan would be to earn a living from this as well as my dancing career.

David Gray-Hammond 0 Comments
Sep 11 2023
CAMHS have been contributing to the death of Autistic young people for over a decade

I was recently sent a BBC article regarding multiple deaths of Autistic young people occurring despite coroners issuing “prevention of future death” (PFD) notices. These notices are only issued when a person’s death is the result of systemic failings and are issued when changes need to be made in order to prevent future deaths. The BBC article looked through 4,000 PFD notices over the past 10 years, and what they found is harrowing.

What is the risk of suicide amongst Autistic young people?

According to the Royal College of Psychiatrists, Autistic children in the UK are 28× more likely to think about or attempt suicide compared to their neurotypical peers. This could be for a number of reasons, but I believe that trauma plays the biggest role in this. Autistic young people and adults experience traumatic events at a higher rate than non-Autistic people. From communication invalidation, to sensory trauma, even good old fashion gaslighting. Autistic people have a rough experience of the world.

It is unsurprising then that Autistic young people, whome some research estimates 94% are victims of bullying, so regularly experience such an inordinately high rate of suicidal ideation and attempts. We also have to consider that Autistic people often exist at the intersections of race, sexuality and gender, other disability, and class. As a result of this, their mistreatment may be compounded by multiple forms of marginalisation.

Why are CAMHS important to preventing the deaths of Autistic young people?

As mentioned previously, Autistic children and young people are significantly more likely to experience suicidal ideation or attempts. Where their is suicidal ideation, there is often psychological distress. I’m fact, according to the Mental Health Foundation; 7 in 10 Autistic people have a diagnosable mental health concern. From this, I infer that over two-thirds of Autistic children and young people need support from CAMHS.

Despite this very high rate of suicide and suicidal ideation, and mental health concerns, only around 10% of patients under CAMHS are Autistic. This represents a large disparity between the accessibility of services for Autistic and non-Autistic groups. This disparity is indicative of wider systemic failings in the support of Autistic children and young people and is supported by the BBC’s findings in PFD notices.

How are CAMHS failing Autistic children and young people?

In her Prevention of Future Death notice to NHS Kent and Medway, coroner Catherine Wood said Sammy fell during an “episode of high risk behaviour” and criticised the local authority and mental health services for “inadequate support”.

She also made it clear that it was “predictable that a similar incident may arise… if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe”.

Quote from the above linked BBC article

The BBC investigation found 51 prevention of further death notices that pertained to the deaths of Autistic children and young people. 51 may not sound much amongst a group of 4,000, but it is. According to the National Autistic Society, over 1 in 100 (1%) people in the UK are Autistic. Of the PFD notices investigated by the BBC, around 1.3% were Autistic. This indicates to me that Autistic people are better represented in deaths regarding systemic failing than they are in the general population.

The screenshot below elaborates on some of the reasons found that control used to the loss of Autistic lives:

The five key concerns identified by the BBC as repeated issues in the deaths of Autistic children and young people, read article here.

What does this mean for CAMHS and Autistic wellbeing?

As I have discussed in previous articles about CAMHS; it is not enough to simply get through the doors at these services. We need them to be restructured and invigorated with new life. In their current form, CAMHS is not fit for purpose. Too many Autistic children and young people are losing their lives, and those lives are at the feet of a CAMHS that has time and again failed to do what it exists to do.

Autistic children deserve the same chance at a happy and meaningful life as any other child. CAMHS are not enabling that.

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David Gray-Hammond 0 Comments
Jul 22 2023
The NHS wants to put surveillance equipment in psychiatric wards: Here’s what’s wrong with that

Psychiatric wards are a challenging environment for patients. Staff often forget that they work where a person is very often forced to live for an extended period of time. At the best of times, patients on psychiatric wards can feel very restricted, with some being monitored on a one-to-one basis 24 hours a day. It’s also no secret that a number of abuses have been brought to light in the last few years. In particular there was the abuse taking place at the Edenfield Centre, one of the UK’s largest psychiatric facilities.

As if abuse of patients’ rights is not already a significant enough issue, the NHS is now seeking to roll out something called Oxevision in all inpatient psychiatric facilities. Oxevision uses cameras and infrared detection to measure vital signs, monitor a patients movements with their room, and alert staff to anything unusual. It can even tell staff how long a patient has been in the toilet. More information from the people who designed this can be found here.

The first counterpoint to any resistance against this technology is likely to be that patients have to consent to monitoring. My response to this would be that consent only works if you can trust staff. Between the frequent stories of abuse, and the mature of the types of distress patients in psych wards experience, I believe consent is meaningless.

As an Autistic and Schizophrenic individual who has been a psychiatric inpatient, I can tell you that I would not trust staff to honour my consent or lack thereof. The use of oxevision has the potential to make patients feel incredibly unsafe in an environment that is meant to help them.

We also need to consider a patients rights. Both the Mental Health Act and Mental Capacity Act require staff to use the least restrictive option. The use of Oxevision restricts a patients human right to privacy, and thus, their liberty by allowing staff to intervene whenever they see fit. There is a fine line between patient safety and deprivation of liberty.

It is fundamentally wrong for patients to be under 24-hour surveillance in their private space. Patient liberty is already heavily restricted in psychiatric settings. How does the NHS justify this?

This is a flagrant abuse of patient rights, and as with many of the abuses in the psychiatric system, it’s being sold with a helpful smile.

Please sign this petition calling to stop the rollout of Oxevision.

David Gray-Hammond 0 Comments
May 20 2023
Autism and ADHD diagnosis and the problem with cultural competency among diagnostic professionals

It’s no secret that diagnosis in the UK (and, in fact, the world at large) is increasingly difficult to access. I have written at length about diagnosis, such as this article on why getting a diagnosis is so difficult, and this piece considering the issues with current diagnostic criteria. Whichever way you look at the current situation, it’s pretty dire.

Currently, there are around 700,000 Autistic people with 122,000 people with am open referral for diagnosis between July 2021 and June 2022. In terms of ADHD, it is estimated that a total of 2.6 million people meet the diagnostic criteria. Autistic children are waiting up to five years for an appointment, with many adults having to go down the private route to obtain a diagnosis. The situation is not any better in terms of ADHD with people waiting (again) up to five years for assessment.

The problem, however, is more complicated than just waiting times. Assuming you can get a referral in the first place, many professionals have very rigid and stereotypical views on how autism and ADHD present in individuals. At this point, I feel it necessary to mention the long-held and deeply inaccurate belief that these diagnoses belong to little boys. This is a view that has been perpetuated by biased research and misinformed media offerings.

This culminates in a culture within which Autistic and ADHD individuals are misdiagnosed or rejected from the diagnostic process for not fitting the diagnostic criteria written in the DSM and interpreted by the diagnostician.

What we are talking about here is a lack of cultural competency. Specifically, we are talking about the concept of neurodivergence competency as conceptualised by Tanya Adkin and written about by the both of us. As you will see from the above linked article, it is not enough to be “neurodiversity affirming”, one needs to have the foundational knowledge and nuanced perspective provided by engagement with the community in question.

This is what is missing. Professionals who diagnose autism and ADHD rarely have cultural experience. In my opinion, if your job is to identify neurodivergence, you should be active in the communities to whom that identity applies. It is not enough to have studied medicine and read some relevant sections of a textbook. To understand what autism and ADHD look like in day-to-day life, professionals need to understand our culture.

This allows a person to see how ideas such as monotropism and the double empathy problem practically apply to neurodivergent lives. It allows them to have a practical understanding of how we mask and camouflage our neurodivergence. It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might present.

It seems non-sensical that after years of waiting for a formal diagnosis, a person might be turned away on a technicality. When a lack of cultural competency stands between a person and a validation of their identity, something is fundamentally broken. People deserve access to and validation of who they are. Gatekeeping it behind services that are oversubscribed, underfunded, and that have no post-diagnostic support to offer is perhaps one of the most unethical things that a branch of medicine can do.

In truth, requiring a diagnosis fundamentally undermines the neurodiversity movement, but the current world is yet to move beyond such diagnostic models. Until such time that diagnostic professionals engage with the communities they exist to serve, there will be a significant power imbalance, and Autistic and ADHD people will be the ones paying with their lives and wellbeing.

David Gray-Hammond 0 Comments
Mar 25 2023
Autistics Incarcerated: The dark underbelly of the NHS

This evening, I took it upon myself to watch Channel 4’s documentary on the abuse of Autistic people in psychiatric institutions. As I sit here reflecting on the way the Autistic participants were treated by those meant to care for them, I will confess that I have shed some tears of my own.

I am one of the Autistic people unlucky enough to spend time in carcerative care.

I have witnessed restraint used as punishment. I have been sedated so heavily that it caused me to develop an irregular heartbeat. To this day, I do not publicly name the psych ward where this happened for fear of retribution. Such is the nature of the power imbalance between Autistic people and the mental health system.

The idea that an institution that is legally considered to be “a place of safety” can be so traumatic seems almost absurd. Yet, there are innumerable Autistic people locked away in these places, experiencing things that no human should. Things do not improve upon release; section 117 aftercare so often goes by the wayside.

Autistic people are treated, at best, as a nuisance in the staffs workplace. Staff so rarely seem to consider that they work in a place we are forced to live. The privilege is theirs, not ours. To assume that we should be grateful for being detained indeterminately is to fundamentally dehumanised us. Autistic people deserve softness and caring, not a lesson in how much the mind can handle before your inevitable demise.

This is an issue that the NHS fails to address year on year. I believe it’s because Autistic people are framed as burdensome and irritating in a system that our government has ensured is on its knees.

Now is the time to speak out. I would ask that if you care to share your own experiences, you do so by using the hashtag #AutisticsIncarcerated.

I choose those words because that is the nature of inpatient treatment. It is not a hospital environment. Each and every one of us deserves to know that we have a place to turn at our darkest moments. We shouldn’t have to fear seeking help.

David Gray-Hammond 11 Comments
Feb 17 2023
Power dynamics and mental health: Neurofuturist discourse of mental health

When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.

Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.

We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.

The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.

Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.

Current systems within mental health treatment are weapons of the oppressive cult of normal.

As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.

David Gray-Hammond 1 Comments
Feb 13 2023
Mental health and the diagnostic process: A neurofuturist perspective

As I discussed in my recent article about co-occurring conditions, the diagnostic process in psychiatry is inherently flawed on the basis that we have failed to find any meaningful relationship between the so-called “symptoms” of psychiatric conditions, and physical biomarkers which can be measured. Despite this lack of physiological cause, we are still diagnosing people as mentally “ill”. Despite this model not improving outcomes for around half a century.

So now we are faced with the issue of how diagnosis is not just given, but also how it is given responsibly.

One of the biggest flaws of psychiatry is the circular logic that dominates the diagnostic process. A person is Schizophrenic because they have symptoms of Schizophrenia, and they have those symptoms because they are Schizophrenic. This logic does not allow for a nuanced understanding of why a person may experience this particular cluster of traits, it simply follows that A = B, which is because of A.

If this is the case, how does one escape from circular logic?

We have to look for causes for traits and “symptoms” outside of the realm of medicine. While I have often remarked that external factors are the only thing with a meaningful relationship to these experiences, medicine is yet to catch up. It seems reasonable to assume that traumatic experiences are the cause of psychiatric conditions and not a problem within the body. This has ramifications for the future of psychiatry.

If people are not “unwell”, psychiatry now has a moral duty to advocate for it’s patients. Psychiatry needs to evolve into a tool for social change, and cease to be a weapon wielded by normative society. Beyond this, psychiatry needs an understanding of the relationships between neurodivergence, trauma, and psychological distress. It is not enough for psychiatrists to bandage the wound, they need to remove the knife from the hand of society.

This requires us to radically rethink our entire perspective on normality and cultural normative standards. We can not just medicate people and expect them to assimilate into society. We need to help them understand their own unique space in the environment and how to embrace their journey through that space.

As I discuss in my book A Treatise on Chaos, identity is a shifting and ever changing value. We are, at our core, beings of chaos. Psychiatry needs to be a tool for supporting us in the more challenging parts of that chaos, and not serve as a ring-fence around the Self.

Psychiatry is not completely off the trail. Medication can serve as an important tool to support a person’s wellbeing, and can be very helpful for reducing the more troubling and distressing aspects of psychological distress. The most important thing is that we all put in the work to evolve psychiatry and mental health support into a means to challenge the oppressive systems that exist within our world.

It’s time to stop the navel-gazing, and build a better future.

David Gray-Hammond 0 Comments
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